Hospital visits for youth with sickle cell disease are often associated with unpleasant periods in their lives as they seek treatment for painful episodes from the disabling blood disease. But their time at Cincinnati Children’s Hospital Medical Center last Saturday was one that provided pleasant memories as the hospital staff and volunteers hosted the youth and their families at the Ninth Annual SCD Research and Education Day, a day of fun-filled programs, educational opportunities and fellowship with what many of the youth say is their familiar “second family’’ comprised of the hospital staff and other youth who deal with SCD.

TOP: Dr. Monica Mitchell, who started the SCD Research and Education Day at Children’s Hospital, is shown with members of the Baker family at the event. About 90 youth with the disease, their families and nearly 200 volunteers enjoyed the day-long activities that included lunch and various activities such as crafts, reading, games and movies. They also compared notes with each other on how their particular treatment was working, learned from the hospital’s nationally-recognized research staff about advances in SCD treatment, and signed up for new clinical studies that will make life easier for SCD patients or hopefully produce a cure.

ABOVE: Enjoying their special SCD Research and Education Day at Cincinnati Children’s Hospital are these kids with sickle cell disease. Photo by Dan Yount Sickle cell disease is an inherited disorder in which red blood cells are abnormally shaped in a sickle or crescent form that inhibits the normal flow of blood throughout the body. This abnormality can result in painful episodes, serious infections, chronic anemia, and damage to body organs. These complications can, however, vary from person to person depending on the type of sickle cell disease each has, medical experts say. But, thanks to advancements in early diagnosis and treatment being conducted at Cincinnati Children’s, most kids born with SCD grow up to live relatively healthy and productive lives.

BELOW: Patients with sickle cell disease select their new shoes provided by Walmart stores during the SCD Research and Education Day at Children’s Hospital Saturday. From left are Michael Clifford, Andasia Clifford and Chermain Glover. “Today, we learned a lot about how to just be normal,’’ Chermain said. Dr. Monica Mitchell, a clinical psychologist and associate professor of clinical pediatrics, organized the first SCD Research and Education Day at the hospital nine years ago, with only about eight kids and their families attending. “We began to think that maybe this was not a good idea,’’ she said in reference to the poor attendance, for more than 275 children were being treated for SCD at the hospital, which is the area’s only inpatient facility for children with the disease. “Then the second year, we had 20 kids and their families, and it continued to grow.’’ More than 400 people were at Saturday’s event, and nearly 40 businesses and organizations in Cincinnati provided support as well as numerous volunteers.

Tiwan Speakes, Walmart’s district market manager, was present to help the kids select from 500 pairs of shoes donated by the company’s 16 stores in the Tri-State. “Many kids with sickle cell disease are from low income families, and we at Walmart thought this would be one of the biggest needs of the kids coming through here today,’’ he said.

Another sponsor was GBBN Architects, which designs some of the hospitals new construction. Michael Lied of GBBN said the more than 30 volunteers from the company were present to give something back to the hospital and the community. GBBN sponsored a photo shoot of the kids and will create a mural at the hospital so they can see their pictures and the pictures of their friends when they come back for treatments.

Dr. Clinton Joiner, director of the hospital’s Comprehensive Sickle Cell Center, emphasized it is important for kids attending the event to learn about new studies they can participate in to advance treatments for SCD, and that they have the opportunity to tell the medical staff how they can improve their care. “Many improvements in the last decade in reducing the illness and the mortality rates due to SCD have all come from our systematic research efforts,’’ he said. “We want all of the families to realize the importance of this research and have their kids participate in it.’’

Tonia Muhammad, the mother of SCD patient Malika Muhammad, could not agree more with Joiner. “My daughter had a high risk for stroke due to sickle cell disease, and because of the research that has been done, doctors are able to identify stroke risk patients earlier and use improved medications in dealing with it. As a result, she is no longer a highrisk patient. She is trying to help others by participating in the research,’’ she said.

SCD patient Briana Berry, 17, returns to the hospital every three weeks for blood transfusions, a common treatment for SCD patients to temporarily clean their body of the sickled cells. Briana has undergone 18 surgeries to repair the damage SCD has done to her body and is doing quite well today. She also participates in an IV blood therapy program.

Briana’s mother, Lisa Berry Hughes, said the day offers great networking opportunities for her and her daughter. “She sees people she does not see all year, and they compare notes on what’s working and not working for them. They find out what others are doing to lead a normal life.’’

Participation in SCD clinic research programs is quite high among the youth, Joiner said, as they hope to help themselves and others improve treatments and find a cure.